United Kingdom: Science Media Centre (including Fiona Fox)

Amazon get millions upon millions of reviews a day. There aren't enough human eyes to review them all, so they use algorithms to screen out bots. Problem is, if there is a real problem with an item, it can be difficult to distinguish between a rush of genuine concern and trolling activity. So, I guess, for them, suspending reviews in the interim is a sensible step. We need to be patient.

Although, at the same time, I wouldn't put it past FF and co to have some levers of their own with Amazon.

 

Like Ms Fox, for instance?

 

Perhaps the bot shuts things down when Nazis are mentioned.
But it was her that mentioned them.

 

OK. Just had this from Amazon:

I haven't tried to resubmit, and I can't access it to edit it. The review is not available to me at all. This is deeply frustrating, particularly for those who wrote long reviews and did not think to save them elsewhere before doing so. Fortunately, mine was short and pithy!

I will just wait. But in the meantime, I will work on my (much, much longer) blog post.

 

In preparation for my blog post, I also came across this ME Association post from 7 years ago, which might be of interest to those preparing similar blogs about FF's book:
http://meassociation.org.uk/2015/03/the-me-association-and-the-science-media-centre-3-march-2015/

It alludes to the lack of expert opinion from other areas. Action for ME posted their own expert opinion from Julia Newton and @Jonathan Edwards, although AfME have since removed the news item from their website. Fortunately Charles Shepherd posted the item in the comments of the Facebook post where I found it, so I have it (in full), if anyone wants to refer to it, or you can check the comments here: https://www.facebook.com/meassociation/photos/a.176956002362066/841973689193624/

I think it explains the problem quite well.

 

yup. it's well-known among journalists

 

Well, when it comes to ME/CFS, it sure seems like...

 

What she says contradicts at every turn. In the video interview above (I think it was) she talks about the wonderful thing being that science still operates based on journals as a source of news bla bla, [whereas sports etc get news from twitter - NB I might be merging inadvertently a few different interviews].

Now she is talking about the god-given right for scientists to what - have access to the media?

Is the point of the two [media and science, or whatever subject] supposed to be theoretically that the media is critical about what is newsworthy - ideally based on checking the accuracy and usefulness of such 'science'.

She is trying to make it sound like these individuals are beign censored by people left right and centre (from government to social media comments) but they were on social media to begin with (so not censored or banned like Trump).

It feels all very confusing.

 

One of the things I am tired of hearing about is the idea that BPS people who mention ME are at risk from "militant activists". I have never, ever heard or read of anyone anywhere being arrested, charged and sentenced for threatening or attacking any BPS person. If such a thing had happened the BPS crowd would have mentioned it ten thousand times by now and would have brought it up in every interview and every piece of writing.

It all seems to be a shared delusion amongst them. They appear to consider anyone disagreeing with them and their theories as being "dangerous" and "militant".

 

Yes. How dare people be assertive in defence of their interests from unwarranted attack.

 

This is about the resignations.

The guideline was signed off by all members before the resignations occurred. Each section was signed off over a number of meetings, and the final draft was then agreed by all.

NICE suggested minor tweaks before the pause, which Peter Barry and Ilora Finlay signed off on our behalf, but which kept the spirit and the letter of the GL intact (it was mainly punctuation, order and wording, that sort of thing).

ETA: We did have right of refusal on these, but didn't need it.

The final version was also signed off by NICE, the chair and the co-chair, taking into account the roundtable discussion, and it didn't include any changes to substance (mainly things like adding more text boxes to add clarity and context).

The reasons they left are their own, but I was informed they were more complicated and individual than 'I don't like this'. I think external factors were an issue in at least two cases, if not all three.

 

Could Fiona Fox get away with writing in such a negative and inflammatory way about patients with diagnosed mental health disorders? Note the contrast between FF's writing about ME patients and about mental health and risk (she is talking about stories that link mental health with violence).



From pages 11 and 12 of the SMC's 'Review of the first three years of the mental health research function at the Science Media Centre'

https://www.sciencemediacentre.org/...arch-function-at-the-Science-Media-Centre.pdf


'Helping researchers to use breaking news stories about mental health to get their messages across'


'When an area is in the headlines, the SMC sees this as an opportunity for researchers to have their voices heard. Mental health problems often hit the headlines for the wrong reasons and coverage can be very negative.'

The SMC has encouraged mental health researchers to engage with the media when their area hits the headlines. For example, when the spotlight was on the actions of Anders Brievik in Norway, the SMC brought together experts from the University of Oxford and West London Mental Health Trust to brief journalists on the role of forensic psychiatry. They explained why psychiatrists need multiple sources of information and lots of time to diagnose, why it is almost impossible to fake a mental illness to avoid prison and gave background to re-offending rates after someone has been in hospital versus prison. The briefing contributed to feature pieces in the Daily Mail'




'Action point: the SMC uses its expertise more often to help support and encourage researchers to engage with high profile, negative stories about mental health problems'


'Breaking news stories often focus on risk and mental health problems – particularly after a violent incident carried out by someone with psychosis. As well as responding directly to negative stories running in the media, the SMC has also worked behind the scenes giving journalists access to information about risk of those with mental health problems.

We have done this most successfully in press briefings on research looking at risk, for example we have run two press briefings on research by Dr Seena Fazel from the University of Oxford. The first was about how much of the increased risk of violence of those with schizophrenia or bipolar disorder is due to substance abuse. The second looked at the way treating adult ADHD can reduce violent crime. Both briefings were well attended by journalists and got good media coverage. Feedback from journalists was that the research challenged their perceptions of the area.

We should continue to look for opportunities to highlight research that challenges perceptions about risk and mental health. In addition, there may be opportunities to feed into training schemes for new journalists to give them context about this area to improve reporting.'



'Action point: the SMC looks for opportunities to challenge perceptions about risk and mental health problems.'

 

@Trish and @Lucibee - I have only ever written one Amazon book review. It was very long and VERY critical of the book. Amazon told me it was being moderated and would take a few days to appear if accepted. It did take about 3 days, but it was accepted. I was sweating as I hadn't taken a copy of it.

 

Always good to remind that when they were asked by a tribunal to prove their allegations, they admitted they had none. The judges scolded them for making "gross exaggerations". Those are the allegations Fox is writing about. Debunked.

If the very best argument that can be made out of this is that Wessely was not technically known to be a PACE researcher and so his own threats was not included, well, that still makes it so rare that even among the group most responsible for this, only one has such evidence, which he won't share. Despite being part of the group, just behind the scenes.

And still, the idea of disrespecting and neglecting millions of sick people on that basis is morally bankrupt, it should be the only argument in the end, that even if true, how does it justify any of this if it's so rare that when all but one of the people who have made those accusations (and he was technically part of the team) are asked to show their evidence, they admit it was false?

Then the death threats became harassment, then trolling, and even they admitted that it was a lie, that the real truth all along, the reason why they accused millions by association of unspecified ill, is because of damn paperwork. Paper. Work. Bunch of cowards.

Publicly available exoneration by a UK tribunal over the false accusations of militant behavior:



Then after the Reuters special report where the death threats were downgraded to trolling, Sharpe and Wessely themselves admitted it's all about paperwork and legitimate complaints:

 

Isn't there something a bit surreal about suggesting that the whole of science is to be suppressed because of a very small group of nutter patients?

I mean, how could a tiny group of deranged ill people persuade the eminent professionals on the NICE committee that good science should be suppressed?

How does making sort of death threats maybe once in a while maybe influence the progress of truth?

It doesn't. The suppression of the (bad ) science was brought about not by death threats but by scientific argument.

I do wonder how many people will take this seriously and how many will think - hang on, there is something a bit odd about these claims.

 

FF does go overboard with hyperbole in her book, but ME sufferers are still confronted with accusations that they 'harass and threaten researchers'. There was such an extended onslaught of lurid misinformation, with repetition, a great many people do believe it. Those stories operate like thought-terminating narratives.

 

People with ME/CFS, and interested academics, asked for the PACE data which showed that there was no objective (actimetry) data - even though they were funded by tax payers [£5 million] to collect same ---- charlatans.
They claim to be the victims ----

 

Have to say I found some of this quite entertaining - hopefully others will see through this nonsense.

 

When this tactic is used, the enemy is always weak and easy to crush, yet powerful enough to affect everything.

It would get too political if I expand, but no one who values what's true uses this tactic. It's a tactic for bullies who are willing to abuse their power.

It's not expected to make sense. Everything is vague and unspecified. It only works if bystanders, and people who should know better, allow it.